Kind hearts that change lives

Kind hearts that change lives - The West Australian

Paul and Verena Edmondson with their daughter Jana. Picture: Ben Crabtree/The West Australian

Jana Edmondson is living, smiling proof that Telethon and the generosity of West Australians can change lives.

The five-year-old has directly benefited from Telethon grants to Bio-Rehab for Kids, a charity that has helped her battle severe cerebral palsy.

The charity is among 41 groups that will today get grants from Telethon to continue their work.

Prime Minister Tony Abbott and Seven West Media chairman Kerry Stokes will attend a special event where charities will be recognised and presented with cheques.

Telethon raised a record $20,701,272 last year. The Federal Government, which donated $2 million, and another 10 groups and companies known as Telethon's Million Dollar Partners will also be recognised at the event.

Paul and Verena Edmondson said Jana had not been expected to walk, talk, see or hear and had to be fed through a tube for the first two years of her life.

Jana, from Coogee, now has a huge appetite and moves surprisingly well in her walking frame - improvements her parents attribute to advanced bio-mechanical rehabilitation therapy.

"As a baby, her ribs were flared and her shoulders were deformed," Mr Edmondson, 47, said. "But she's made really good progress and her chest is filling out like a normal kid.

"She was originally classed as a level five, which is as bad as you can get. They've already reclassed her as level four and you don't see that often."

ABR is a massage-based therapy that aims to correct skeletal alignment by strengthening the myofascia or connective tissue in the body.

Parents can administer the therapy at home with training but most of it is done by machine while the child is asleep.

Mr Edmondson, the secretary of Bio-Rehab for Kids, said Telethon funding would allow the charity to buy 10 ABR machines, halving the cost of the therapy.

"The only reason this therapy is available in Perth is through previous Telethon grants," he said.

"We actually fly people over from Singapore to train the parents.

"Previously, we had to lease these machines from ABR Asia and, of course, that's expensive."

The Perth Public Art Foundation will also receive a grant to continue its work introducing sick children to art and researching the impact.

"We commission artists to work with children who experience severe ill health," managing director Nathan Giles said. "We do workshops and interviews with those children - we want the children to inform the creative process."

Last year, it constructed the Telethonasaurus named Roary - a 4m dragon inspired by the children at Princess Margaret Hospital.

"We took Roary into PMH and did story-telling with some of the kids," Mr Giles said.